Wednesday, April 1, 2015

Autism Awareness Day 2015

The Autism and Developmental Disabilities Monitoring (ADDM)
Network is a group of programs funded by CDC to estimate the number of children
with autism spectrum disorder (ASD) and other developmental disabilities living
in different areas of the United States.

I’ve spent a lot of time thinking about what I wanted to
write about for this year’s Autism Awareness Day (and a HUGE thank you to RJ
Scott for once again organizing this!).There is just so much that is involved in an ASD diagnosis.Then I thought, why not go to the expert, my
daughter, who is 14, in 8th grade, and who was diagnosed with
Asperger’s Syndrome 10 years ago.*

First, I asked her what the worst part of having an ASD
diagnosis was.She had two immediate
answers.The first, and the one that is
a constant struggle, is that people just don’t understand.To look at my beautiful, talented,
intelligent girl you’d never realize that she’s not a neuro-typical teenager.Spend a little time with her and you’d probably realize that something
was ‘off,’ but you wouldn’t be able to pinpoint exactly what.Spend a lot of time (or catch us on a bad
day), and it would be obvious that there was something going on, but it could
still be difficult to know exactly what it was.

On a typical good day, unless you were working closely with
her, you’d probably just think that she was a little odd, a little awkward, a
little clumsy.On a bad day, you might
see her refusing to talk, to listen.She
might throw something.You would definitely
hear her litany of negative self-talk.She would be snappish and rude, and then remorseful and full of
regret.On a really, really bad day, you
might even see her hit someone.

Middle school has to be the worst, most turbulent time in a
child’s life (I know it was for me), and it’s been a struggle for us.When things are going well, they go really
well, but when things are going poorly…

Included with her ASD diagnosis she has a diagnosis of
Tourette’s and GAD (generalized anxiety
disorder).She’s also dealing with the hormonal
mood swings that all kids her age deal with.All of this combined can lead to some long and frustrating days for all
of us.

She has a very difficult time identifying her anxiety (both
that she’s feeling and the source of it), so by the time she realizes that she’s
feeling anxious, it’s too late to get it under control before she’s out of
control.We’re working with her
counselor and her pediatrician right now to once again adjust her meds (we had
a great balance, and then she grew and threw off her dosage).At least three days a week she calls me from
the guidance office at school because she’s upset.The vast majority of the time she has no idea
what she’s upset about.I then have to
try to talk her through it, and hopefully, get her back to class (thank
goodness she’s so smart – she misses a lot of school, and she still pulls all As),
or decide if I need to go pick her up for an hour and let her calm down at home
(thankfully we have the option build into her IEP).

Obviously, this takes its toll on me, as I’m constantly on
edge, waiting for my phone to ring, and hoping that when it does I’ll know how
to handle the situation.I’ve been a
stay-at-home mom for about six years now, and I can’t imagine how I would be
able to handle the stressful, demanding, full time job I had on top of taking
care of her.

We are very blessed in that her school does a lot to work
with us.I know many parents who are not
as fortunate.A little understanding
from education professionals, medical professionals, and the general public
goes a long way toward making my daughter’s life easier.

Her second answer she gave me was that ‘there isn’t much I
don’t like about having Autism.’Probably not the answer you were expecting to get, right?Despite all that she has to deal with, she is
learning to like herself.She likes that
she’s a little different, that she looks at things from a unique perspective,
and that can offer things that other kids can’t.It’s a funny thing, because she has some
serious self-esteem issues that we are constantly working on.However, when she’s in a good place, and is
calm and able to be objective, she’s learning to recognize that she is an
amazing young woman who has a lot to contribute.

I then asked her what was one thing that she’d like everyone
to know about Autism.Her response was
not a surprise: she’d like people to be more educated and understanding, and
since you’re reading this, a heartfelt thank you to you, because that’s exactly
what you’re doing.

She doesn’t have tantrums and fits in public like she used
to, but I well remember the days of the stares and looks of disgust that people
would give us.Yes, the fact that the pepperoni
is under the cheese on the pizza is a big deal, and she’s not just being a ‘brat’
are the types of things that I don’t miss dealing with.Now, she’s more likely to blurt something
awkward or off topic to a stranger, and that at least, is easier to deal
with.

Educating yourself, your family, your kids (especially your
kids) can make a huge difference in the world for other kids on the
spectrum.Being willing to look beyond
some eccentric behavior could allow you to meet some amazing people, like my
daughter.Thank you for taking the time
to read this, and for making the lives of families dealing with ASD a little
bit better.

*Asperger’s Syndrome is no longer an actual diagnosis – it now
simply falls under the umbrella of Autism Spectrum Disorder.You can read more about the change here.

About Me

Growing up, AJ always had her nose stuck in a book. Her vivid
imagination made it difficult for her to decide what she wanted to be
when she grew up. She has a B.A. degree in Political Science, and spent
twelve years working in management in the veterinary medicine field.
She left her job as hospital director of a companion animal hospital a
few years ago to devote herself full-time to her daughter who is on the
Autism Spectrum.

AJ has always been creative, and loves the way
she can build worlds and characters in the stories she writes. She also
enjoys jewelry making and paper crafts.

AJ grew up outside a
small town in northern Michigan, and currently resides in the southwest
corner of the state with her high school sweetheart husband, her
daughter, one cat, and one dog (both rescues).